Navigating the first few days

Some of the topics discussed will get you thinking about your own experiences. If you feel any distress, talk with someone you trust—perhaps a family member, friend, or your doctor. If you need support, information or advice StrokeLine’s health professionals are available 9am to 5pm, Monday to Friday, AEST. Call StrokeLine on 1800 787 653 or email Lifeline is available 24 hours a day on 13 11 44.

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Video transcript

Carly: In the, in the neuro world, in the world of acquired brain injury, it’s a very difficult dynamic between patients and specialists and clinicians because not a lot of patients can communicate very well. Emergency rooms and frontline responders must be and need to be a lot more aware of young stroke and the prevalence of young stroke in communities. We need to raise awareness for the signs and symptoms that stroke presents.

Laine: My husband was told the night that we moved from the emergency hospital to the stroke unit, a young doctor said to him “Your wife’s not going to be the same again.” And for him, I cried, I’m upset for him to have to hear that when, your wife’s, you know, it’s the unknown, and to have that said to you in such a straightforward clinical way. That was quite hard for him.

Shannon: I felt that I got a lot of information, but I sought out the information because I was in the medical field. I was a nurse, so I wanted to know why I had the stroke. Although I couldn’t talk, I could write. And I said “Why? Why do I have this stroke?”

Toni: For me, because I didn’t have, didn’t go into hospital, didn’t get any of that assessment. I actually didn’t get any support outside of my GP. So it was more about me than trying to jump in on the Stroke Foundation website and just trying to find answers for myself. My deficits were very slow, sort of, to come out, though it’s obvious, it was hard to work out, I suppose, what I needed to do.

Carly: I was not discharged with an action plan. I was not discharged with a rehabilitation plan. I was discharged with a letter that said “Please come back to the outpatient clinic in six weeks and make contact with your GP.”

At the six week outpatient checkup that’s when I really started to turn a corner in terms of understanding what had occurred to me. And then also partnering with clinicians who were very experienced and well equipped to help explain what was going on and what had happened to me. It took a highly experienced stroke neurologist two minutes looking at my MRIs to say “This is one episode. You’ve experienced one stroke. And you’ve had lots of multiple clots hit both sides of your brain.

Paul: Later on, it was a more of a mixed experience. That’s a lot of the information was coming my way. You know, the pamphlets and stuff I couldn’t really relate to because it was all pictures of retirees on the front of them. I was a guy in my early to mid forties. You know, my wife had just given birth three months before to my second child. We had a four year old and I was running a business. You know, when you do get those pamphlets and those take homes and you know, you’re basically sharing a rehabilitation hospital with people of my grandparents age at the time and you know, a little bit younger. It’s, yeah, it’s something I couldn’t really relate to. And it was a real. Yeah, it was. It was. It was a bit of a barrier.

Emma: My experience in hospital was I was the only young person there. Everybody seemed to be older.

Kim: And you just needed to be there to get information from the doctors, the nurses, to find out what was going on. We were a little frustrated at times by the, the lack of what we felt was that slowness to give her some support to rehabilitate quickly enough. We were impatient for that to happen.

Carly: I had some run ins and tricky, intense incidents with my clinicians because I was asking a lot of questions. I don’t think that they’re always used to that. I was challenging. I was trying to understand what was going on. And that always wasn’t well received.

Paul: I think there’s some folks out there that are just so scared to make a call that they don’t. And I’d much rather say, have somebody say to me “Hey this is what we think is going to happen. But the caveat is ABCD.” And just be upfront. And I did get linked in with some support services and, you know, my rehab hospital and the staff there who shot straight. You know, they would flat out tell me and particularly my wife, because she ran most of the, you know, the communications. I wasn’t up to taking it on board. They would say, Well, look at some things we just don’t know. It’s going to be trial and error.

Laine: When we first left hospital we were really lucky again that we were given a really great outpatients program, so I knew who my physio was, OT was coming to the house. So things were put into place, which is great.

But the thing that probably hindered was there was no information in regards to where you go for emotional support. Just to download all the stuff that you’re feeling inside. And I had to do a lot of research myself. To find out who to speak to when looking for a brain injury, an acquired brain injury psychologist who I then spoke to, and that was really good.

Shannon: The therapy was fantastic, but when I returned to work, I, no longer had speech therapy. I needed speech therapy, but I no longer had it. So I didn’t get speech therapy until 15 months later, because we couldn’t afford private speech therapy. So I was doing exercises on my, on my own.

Jodie: The physio, that I go to, I go to twice a week and, and that really sets up the neuroplasticity. He’s awesome at, knowing, knowing what it is and, and actually just grabbing just a couple of movements. And if you get those two movements, then you’re free.

Laine: The physio always said to me, if you don’t use it, you lose it. So referring to my left hand or my left leg. And I think my leg came back faster than my left hand. The bigger muscle, obviously. So they always try to get you up and walking. You know, every time I walk into a room, I turn on the light or with the light switch with my left hand. And very conscious of making sure that I use this left hand that is part of me, rather than taking the easy option of using my right hand because it was easier and it was more comfortable. So I think that was probably the best advice from a clinical perspective.

Shannon: The stroke nurse at the hospital said to me. “You’ll get through it.” And that stuck in my mind.